The Hyper IgM Foundation Blog
The Hyper IgM Podcast – Patients Voices! Episode 9: King is Looking for his Lifesaving Stem Cell Donor
Episode 009: – King is Looking for his Lifesaving Stem Cell Donor:
In Episode 9 of the Hyper IgM Podcast, Ezra talks with King, a 13-year-old boy currently living with Hyper IgM and searching for his life-saving stem cell donor. King shares what it’s like living with Hyper IgM, hosting stem cell donor drives, and watching his little brother Ace, who is 6 and also has Hyper IgM, go through a transplant. Enjoy the episode!
Learn more about Ace and King here: https://www.giftoflife.org/dc/kingandace
Swab Your Cheek For King with Gift of Life!: https://www.giftoflife.org/register?SPCODEPrm=kingandace
All our previous episodes are below and on our Hyper IgM Podcast YouTube Channel. An audio version of the podcast can be found on Apple, Spotify, or wherever you get your podcasts. Please don’t forget to subscribe and share. Enjoy!
Subscribe today to our Podcast YouTube Channel or follow the audio version of the Podcast on Spotify, Apple, or wherever you get your podcasts!
In the world of rare diseases, amplifying patient voices is crucial for empowering others to make informed treatment decisions and for providing insights to healthcare professionals and researchers about the patient experience and its impact on quality of life. With conditions like Hyper IgM Syndrome, a rare immune deficiency affecting one in a million individuals, the majority of those affected are children. Yet, narratives in the pediatric rare disease realm often stem from the perspectives of parents, medical professionals, or adult survivors.
Breaking this mold, the Hyper IgM Foundation has launched an innovative podcast, where children affected by X-Linked Hyper IgM Syndrome share their own stories. Led by Ezra Fineman, a 16-year-old high school sophomore and two-time recipient of a hematopoietic stem cell transplant due to Hyper IgM Syndrome, the podcast offers a fresh format. Here, young patients interview one another, providing intimate and informative conversations about their experiences with Hyper IgM Syndrome and life with a rare disease. This approach offers a unique glimpse into the patient journey from the perspective of pediatric patients themselves.